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A closer look at Fetal Alcohol Syndrome

More... National Organization on Fetal Alcohol Syndrome

Fetal Alcohol Syndrome (FAS) is an alcohol-related birth disability and is the number one cause of mental retardation in the United States. It is also the only cause of birth defects that is entirely preventable. The condition occurs from maternal alcohol use during pregnancy. When a pregnant woman drinks alcohol, it passes through the placenta and is absorbed by the unborn baby.

Children with fetal alcohol syndrome typically have multiple handicaps and require special medical, educational, familial and community assistance. These children may require lifelong, expensive, intensive care and intervention to reach their potential. There is no known safe amount of alcohol use during pregnancy and no known time when drinking alcohol is safe. Alcohol can do more damage to the developing embryo and fetus than illegal or legal drugs.

What are Alcohol-Related Neurodevelopmental Disorder (ARND) and Alcohol-Related Birth Defects (ARBD)?

Prenatal alcohol exposure does not always result in FAS—although there is no known safe level of alcohol consumption during pregnancy. Most individuals affected by alcohol exposure before birth do not have the characteristic facial abnormalities and growth retardation identified with FAS, yet they have brain damage and other impairments that are just as significant.

Alcohol-Related Neurodevelopmental Disorder (ARND) describes the functional or mental impairments linked to prenatal alcohol exposure, and Alcohol-Related Birth Defects (ARBD) describes malformations in the skeletal and major organ systems.

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What are the Primary Characteristics of FAS, ARND and ARBD?

Individuals with FAS have a distinct pattern of facial abnormalities, growth deficiency and evidence of central nervous system dysfunction. In addition to mental retardation, individuals with FAS, ARND and ARBD may have other neurological deficits such as poor motor skills and hand-eye coordination. They may also have a complex pattern of behavioral and learning problems, including difficulties with memory, attention and judgment.

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How often do FAS, ARND and ARBD Occur?

As many as 12,000 infants are born each year with FAS and three times as many have ARND or ARBD. FAS, ARND and ARBD affect more newborns every year than Down syndrome, cystic fibrosis, spina bifida and Sudden Infant Death Syndrome combined.

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Identifying Fetal Alcohol Syndrome (FAS)

Physical Characteristics Related to FAS, ARND or ARBD

Growth deficiencies may include: Facial malformations may include:
  • Low birth weight
  • Small size for age in weight and length
  • Small head for age
  • Failure to thrive
  • Short eye slits
  • Droopy eyelids
  • Widely spaced eyes
  • Nearsightedness
  • Crossed eyes
  • Short upturned nose
  • Low and/or wide bridge of the nose
  • Flat or smooth area between the nose and lip
  • Thin upper lip
  • Flat midface
  • Small underdeveloped jaw
Other effects may include:
  • Large or malformed ears
  • Underdeveloped fingernails or toenails
  • Short neck
  • Poor eye-hand coordination
  • Hearing problems
  • Joint and bone abnormalities

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Behavioral Characteristics Related to FAS, ARND and ARBD

Children with FAS, ARND and ARBD often have behavior problems due to brain injury. Some have more behavioral problems than others. Some are so severely affected that they cannot function independently in the community. Behavior problems will vary with the individual.

They include:

Other effects may include:
  • Hyperactivity
  • Stubbornness
  • Impulsiveness
  • Passiveness
  • Fearlessness
  • Irritability
  • Sleep difficulties
  • Teasing or bullying of others
  • Hypersensitivity to sound and touch
  • Difficulty with change
  • Organizational difficulties
  • Poor self-image
  • Overstimulation difficulties
  • Depression or withdrawal
  • Problems with truancy
  • Problems with sexuality

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Learning Difficulties Related to FAS, ARND and ARBD

Children with FAS, ARND and ARBD frequently have learning difficulties. These difficulties result from poor thinking and processing skills. Information may be known, but cannot be applied to different situations. Learning may occur in spurts. Easy learning periods may be followed by harder ones. During difficult periods, children may have trouble remembering and using their learned information. Because of inconsistent learning, teachers may think they are just not trying. They may label them as lazy or stubborn.

Difficulties may include:
  • Developmental delays
  • Attention deficit
  • Poor organization skills
  • Problems with memory
  • Poor mathematical skills
  • Difficulty with abstract concepts
  • Difficulty learning from past experiences
  • Difficulty understanding cause and effect
  • Speech delays, stuttering and stammering

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Behavior

There are many behavioral characteristics which differentiate FAS, ARND and ARBD patients from other mentally retarded individuals. Socially, they tend to be very outgoing and socially engaging, yet they are frequently seen by others as intrusive, overly talkative, and generally unaware of social cues and conventions. Poor social judgment and poor socialization skills are common: many patients are hungry for attention, even negative. Due to their social immaturity, they have difficulty establishing friendships, especially with children of the same age. The potential for both social isolation and exploitation of individuals with FAS, ARND and ARBD in very evident. Hyperactivity is frequently cited as a problem for young children who characteristically have short attention spans. Many also have memory problems, thus creating further setbacks to adaptive functioning and academic achievement later on.

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Inappropriate Social Skills Related to FAS/FAE

Children with FAS/FAE often show socially inappropriate behavior due to impaired practical reasoning skills. They also may be unable to consider results of their actions. They may miss cues used as subtle messages like gestures and facial expressions. They may be socially and emotionally immature and have difficulty getting along with peers.

Children with FAS, ARND and ARBD can be easily influenced by others. Due to their trusting nature and eagerness to please, random attraction to strangers may occur. They may be vulnerable to manipulation and victimization. This can cause concern for caregivers. Constant supervison may be required.

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Educational Needs

Children with FAS, ARND and ARBD have special educational needs. Even very young infants can benefit from early stimulation programs to help with intellectual and motor development.

Preschoolers often have a range of developmental and language delays as well as signs of hyperactivity, irritability, and distractibility. Preschool programs which follow individualized educational plans are helpful for the child as well as for the parents who gain valuable respite time to regroup from the intense demands of these children.

Appropriate placement in special education classes beginning in elementary school is often necessary for children with FAS, ARND and ARBD. A small classroom setting with clear guidelines and a great deal of individual attention can maximize the intellectual capabilities of these learners. Although intensive remedial education has not been show to increase the intellectual capabilities of children with FAS, ARND and ARBD, it may prevent further deterioration.

Many patients with fetal alcohol syndrome reach an academic plateau in high school. Many will be unable to hold a regular job. Nonetheless, all of these students need to know basic life skills, including money management, safety skills, interpersonal relating, and so forth. These tasks will enrich their adult lives and allow them a degree of independence. The addition of such a life-skills component to the special education curricula for FAS students can be invaluable. Wherever possible and appropriate, vocational training should be part of the high school experience. Unfortunately, most vocational and technical institutes beyond high school will offer a curricula too academically rigorous for developmentally delayed individuals.

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Strategies for FAS Parents and Caregivers

Keys to working successfully with FAS, ARND and ARBD children are structure, consistency, variety, brevity and persistence. Because these children can lack internal structure, caretakers need to provide external structure for them. It is important to be consistent in response and routine so that the child feels the world is predictable. Because of serious problems maintaining attention, it is important to be brief in explanations and directions, but also to use a variety of ways to get and keep their attention. Finally, we must repeat what it is we want them to learn, over and over again.

Many FAS children:

  • Have difficulty structuring work time.
  • Show impaired rates of learning.
  • Experience poor memory.
  • Have trouble generalizing behaviors and information.
  • Act impulsively.
  • Exhibit reduced attention span or is distractible.
  • Display fearlessness and are unresponsive to verbal cautions.
  • Demonstrate poor social judgment.
  • Cannot handle money age appropriately.
  • Have trouble internalizing modeled behaviors.
  • May have differences in sensory awareness (Hypo or Hyper).
  • Language production higher than comprehension.
  • Show poor problem solving strategies.

Effective strategies include:

  • Fostering independence in self-help and play.
  • Give your child choices and encourage decision-making.
  • Focus on teaching daily living skills.
  • Encourage the use of positive self talk.
  • Have child get ready for next school day before going to bed.
  • Establish a few simple rules. Use identical language to remind them of the rules. "This is your bed, this is where you are supposed to be."
  • Establish routines so child can predict coming events.
  • Give child lots of advance warning that activity will soon change to another one.
  • For unpredictable behavior at bedtime/mealtime, establish a firm routine.
  • Break their work down into small pieces so they do not feel overwhelmed.
  • Be concrete when teaching a new concept. Show them.

Discipline:

  • Set limits and follow them consistently.
  • Change rewards often to keep interest in reward getting high.
  • Review and repeat consequences of behaviors. Ask them to tell you consequences.
  • Do not debate or argue over rules already established. "Just do it."
  • Notice and comment when your child is doing well or behaving appropriately.
  • Avoid threats.
  • Redirect behavior.
  • Intervene before behavior escalates.
  • Avoid situations where child will be overstimulated.
  • Have child repeat back their understanding of directions.
  • Protect them from being exploited. They are naive.
  • Have pre-established consequences for misbehavior.

The foster or adoptive parent of a child with FAS assumes a responsibility far beyond that normally associated with parenting. The constellation of physical, intellectual, and behavioral characteristics that typifies patients with FAS can create a very demanding situation for any family. The children often require constant supervision. Parents require an extraordinary amount of energy, love, and most of all, consistency.

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The Need for Advocacy

Children and parents dealing with the problems of FAS/FAE need strong advocates. Advocacy must come from both the parents and the professionals involved. Their different spheres of influence and different roles must combine to ensure that the needs of both parent and child are being met.

Despite the many problems of patients with FAS/FAE, these individuals have a great capacity for love and contribution to family and community. The challenge of caretakers and service providers alike is to help these children harness their potential and find their place in the world.

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Sources

This article was compiled from the following sources. To see the full text of these articles, click on the links below.

Attached below are two excellent guides for parenting the FAS child. Both are in PDF format.

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Resources for FAS caregivers


If you are a Texas resident and are not approved as a foster or adoptive family, please fill out our Adoption and Foster Care Interest form in the Get Started section.

If you have questions or want to inquire about a specific child or sibling group, contact the Texas Adoption Resource Exchange (TARE) or call 1-800-233-3405.

                                                                                                                                                                   
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